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Reply | Forward Message #57 of 104 |
Hi:  My name is Deb and my son James is 11 months old.  He has Marshall's.  I have just joined and would like to talk to other people and/or parents living with this condition.  We just had James fitted for an obturator (a mouth piece to close off his mouth from his nasal cavity) as he has a cleft palate that won't get fixed for a few months yet.  I'm just wondering what to expect in the future - there's not a lot of information out there, and my doctors are not very familiar with Marshall's.  Does anyone know of a doctor who specializes in it?  Any information would be sincerely appreciated.



Tue Sep 16, 2008 4:27 pm

debhat70
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Message #57 of 104 |
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Hi:  My name is Deb and my son James is 11 months old.  He has Marshall's.  I have just joined and would like to talk to other people and/or parents living...
Deborah Hatfield
debhat70
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Sep 16, 2008
4:27 pm

Welcome Deb, This list gets very very little activity. Although people here call it Marshall's Syndrome, I was told by National Institutes of Health that it is...
Christy Hill
care4k9ss
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Sep 17, 2008
3:00 am

Hi Deb & Christy (and everyone else)! We have an 8 year old son, Nathan, who was diagnosed when he was one year old with Marshalls. He has had hearing aids...
Vickie L. Specht
vickiespecht
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Sep 17, 2008
2:22 pm

Vickie, I'm one of the fortunate ones with Marshall's that do not have severe joint issues. I would say I didn't get achy joints or soreness issues until I was...
Christy Hill
care4k9ss
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Sep 18, 2008
5:52 am

Christy: Thanks for your reply.  It is nice to know what James' condition is, so we can watch out for sight and hearing issues, but still hard not knowing...
Deborah Hatfield
debhat70
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Sep 18, 2008
4:13 pm

Hi Christy and all: Thanks for your reply.  It is nice to know what James' condition is, so we can watch out for sight and hearing issues, but still hard not...
Deborah Hatfield
debhat70
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Sep 18, 2008
4:14 pm

Hey! Great we have discussion here! WHOO HOOO!!! Yeah, I have some of the facial features of Marshall's. I have extremely narrow hips, very short legs, but...
Christy Hill
care4k9ss
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Sep 19, 2008
1:54 am

Christy, Thanks for sharing. Time will tell how Nathan will do. Actually, I may have asked you this same question a year or two ago :) . . .it is nice to...
Vickie L. Specht
vickiespecht
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Sep 18, 2008
5:44 pm

Vickie, ... Christy...
Christy Hill
care4k9ss
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Sep 19, 2008
2:05 am

Hey Christy, Lalo will turn one on October 18th. It is amazing how fast time flies! We are throwing him a cowboy party, it is going to be a blast! hope you...
aranda.michel
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Sep 22, 2008
4:13 am

... birthday? ... National Institute of ... an MRI on my heart ... with Turner's ... was when they said I ... consistent with ... saw many people ... point is,...
aranda.michel
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Sep 22, 2008
4:24 am

Hi everyone: When my son James was born, then did a number of tests and determined that he had a bicuspic (?) aortic valve, but they also said that it was not...
Deborah Hatfield
debhat70
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Sep 23, 2008
4:59 pm

Hey Deb, We live in Southern California, in San Pedro, south of L.A. it is cool how close their birthdays are! Although he does not have a cleft palate, it...
aranda.michel
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Sep 24, 2008
6:09 am

WOW! , ... I have lived in San Pedro back in 1996, then moved to Torrance from '96 - 2000. I now live in the San Diego area :-) Moved here 6 months ago. From...
Christy Hill
care4k9ss
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Sep 25, 2008
3:15 am

Dear Michel & Aaron:   I am sure that I will need advice getting James to wear his glasses.  I know he will need them as he often brings things very close to...
Deborah Hatfield
debhat70
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Sep 29, 2008
3:26 pm

Hi Deborah, My name is Mandy and my son Dean has been wearing glasses and hearing aides since he was approximately 4 months old. Dean also did the birth to 3...
mndygianotti
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Sep 30, 2008
7:47 pm

Hi Mandy:   Thanks for the info.  James also has Pierre Robin and Marshalls.  When did they fix Dean's palate?  And how is his speech now?  Have you had...
Deborah Hatfield
debhat70
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Oct 1, 2008
4:07 pm

Dean's palate was repaired on his first birthday...unfortunately we had to go to gainesville and have it taken apart and redone this past may.  I wish I had...
Mandy Gianotti
mndygianotti
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Oct 8, 2008
2:53 am

Why did they have to repair the palate?  Was it repaired incorrectly the first time?  Is there anything I should be looking for as far a problems.  And some...
Deborah Hatfield
debhat70
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Oct 8, 2008
3:07 pm

The second repair was for speech issues...the varangyl (sp?) flap was insufficient.  Basically Dean outgrew his palate.  Unfortunately we only had 1 plastic...
Mandy Gianotti
mndygianotti
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Oct 8, 2008
7:55 pm

Thanks for the pictures - your children are beautiful.  James has a eye doctor appointment on October 23rd, so we will see what the Dr. says, and try to get...
Deborah Hatfield
debhat70
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Oct 9, 2008
2:32 pm

CONGRATS!!! on the first year...it truly is the hardest one to get through.  It should get lots easier as time goes on.  You are taking James to a pediatriac...
Mandy Gianotti
mndygianotti
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Oct 16, 2008
2:51 pm

Hi: How do the cataracts affect Dean's vision.  And if he can't go to a regular eye doctor, who will he go to when he is an adult?   James sees a pediatric...
Deborah Hatfield
debhat70
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Oct 21, 2008
5:25 pm

Hi, sorry its taken me so long to get back to you.  James is so adorable....I hate to say it, but Dean wasn't that handsome as an infant.  He has really had...
Mandy Gianotti
mndygianotti
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Oct 29, 2008
2:26 am

Hi Everyone: Mandy, I appreciate all of the information you gave me, and it sure sounds like you have a great medical team.  We live in Northern Wisconsin so...
Deborah Hatfield
debhat70
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Nov 4, 2008
9:32 pm

It sounds like we have very similar teams...ours is called the cranio-facial team so they don't just concentrate on clefts...but I think they make up the...
Mandy Gianotti
mndygianotti
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Nov 5, 2008
1:04 am

Hi: I was wondering if you could clue me in on what the recovery is like for palate surgery.  How long before he can eat, pain management, etc.  It makes us...
Deborah Hatfield
debhat70
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Nov 11, 2008
5:01 pm

The first palate surgery was easier than having a feeding tube placed for Dean.  The morning after surgery he was sitting up in an oxygen tent and playing...
Mandy Gianotti
mndygianotti
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Nov 11, 2008
10:32 pm

Hello everyone:   James is walking!!  13 months old, so just about the same time as our daughter started.  We are looking forward to our surgery consult on...
Deborah Hatfield
debhat70
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Nov 19, 2008
8:53 pm
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